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Starting Amevive and a Little
Greetings Ed: Holy cow! First, and foremost, let me just say that “I love your site.”
I've been, you might as well say, a life-long sufferer of P. I've lived with it since I was 2 years old (developed it after a tonsillectomy) and am now 41.
My earliest memory of the dreaded P is when I was about 4 or 5 and my mother made me stand on a kitchen chair so she could dab every “spot” with an ointment. I'm sure it made her feel better to do that for me, but it certainly didn't make the spots go away.
Mom gave me home remedies of drinks that resembled bog-water, goats milk (my dad traveled hours to get it), and there there was saran wrap, oils……. yada, yada, yada….. and while all the dermatologists were wanting me to try this ointment and that one and more yada, yada, yada.
In my teen years it bothered me terribly because my twin sister was beautiful and “normal” in every sense of the word. She was, however, my ROCK. Whenever anyone said anything mean to me, she took care of it. So.... As a result of my ever-faithful twin, my life was ok, even with the P.
At the age of 38 I found my savior. Dr. K and his side-kick and wife, Mrs. Dr. K. I've had PUVA for 2 1/2 years total and it works wonders.
Unfortunately, my older sister (I was 39 and she just turned 40) was diagnosed with breast cancer and 1 year later died. I traveled home to spend time with her during her last 5 weeks in the hospital, taking care of her every whim until she died. You guessed it, the worst flare of my life and yet, when I returned home, I didn't immediately go back to the routine.
After a year I went back and started PUVA again. All is fine but the distance (an hour each way, 3 days a week) means work is taking a beating! So I fought with my Medical Care Company and won.
I’m starting Amevive but am very worried. I read, read, read and am very disturbed at what some of the side effects are. The nausea I'm used to because of the Oxsorlene, but…. cancer (especially with my sister’s history)?
My dermatologist knows all my medical history and I'm sure he wouldn't recommend something that would put me in harm’s way.
As far as Amevive, when I spoke to them this morning after receiving my approval letter yesterday, they were more concerned about where to send the “free” backpack and journal. I could care less, really. Just send the DRUGS!!!!
I'll be in touch. Kudos Ed! -Gayle L.
Ed’s Response: Thanks for the kudos, Gayle, and for writing. Your fear is understandable, but don’t let your fear grip you. Your derm will be careful and you will be monitored along the way. As you know from your reading here, Amevive has met with mixed responses. The “cancer” risk is very small and there are likely to be indications that will lead your derm to pull the plug before anything major happens.
By far the majority of people I’ve heard from through FlakeHQ, and who have tried Amevive, report long wait times before improvement is noticeable. As you know, the “course” is 12 weeks long. Several people have reported not seeing any improvement until AFTER the 12 week course!
Also bear in mind as you go through your course that Amevive isn’t the only boat moored in this harbor called “Biologics.” Many people have tried more than one and I hope you remain open to that possibility, too. (Surely Enbrel will be approved in Canada, soon ... and Raptiva ... and Remicade ... Humira....!)
Please keep us informed about your experience. -Ed